Osteopenia/ Osteoporosis and Prednisone

Hello @rnm, While you wait for members to respond, here is a search of Connect for members who have shared experience with osteopenia and PMR - https://connect.mayoclinic.org/search/comments/?search=osteopenia%20and%20PMR.

I'm tagging @pmrsuzie, @brenbarnhart1, @pdxmac and @jiffaw who have mentioned having PMR and osteopenia to see if they may have some experience and can help answer your questions.

Hello @rnm
I was dx with osteopenia long before the PMR diagnosis. I have been on Alendronate (Fosomax) for 4 years. Between that, extra calcium, weight bearing exercise, and vitamin D I have been able to get my bone density up somewhat according to the dexascan. (i can look up the numbers if that's helpful)
I started at 20mg of pred starting in September 2023, I've been down as low as 10, then needed to go back up to 20 early this year. Back down to 11 currently. I've been asking my PCP for a new dexascan to see how my bones are holding up but she says it's too soon since my last one. And there's nothing to do for osteopenia other than what I'm already doing so it's pointless.
I have been teaching myself how to safely fall and that has saved me some broken bones I believe! I fell once hard with no repercussions and have stopped myself mid-fall at other times.
Good luck and I hope this is helpful.

Hello @rnm
I am 76 and was diagnosed with pmr in Dec of 2018 if I remember correctly. I started on 20 mg prednisone. I had already been having dexascans every two years because of having had a broken bone in my foot. I already knew I had osteopenia. I was already taking Vitamin D, 2000 IU daily, and am still taking that dose. I opted to not take calcium supplements because my dad had a few bouts with kidney stones so I try to get enough calcium with my diet. The first scan after being diagnosed with pmr was a little worse than the previous scan. The endocrinologist I was seeing suggested Reclast as a bone medicine. After reading about all the possible bone medicine choices, I decided on the Reclast mainly because it's a once a year infusion - no pills to worry about. I have had two doses. My scan did improve. Last year I had a nasty fall, no broken bones, and decided to wait til the 2026 scan before making a decision about another dose of the Reclast. I did not seem to have any side effects. All those bone meds can have side effects.
As far as my prednisone dose, I have never gone above the 20 mg. My nemesis has been tapering below 7 mg. Right now I am at 2.5 mg. I have had flares while tapering but have never felt as bad as when the pmr started.

I am 62 years old I was diagnosed with PMR in August of 2023. Started on 20 mg of prednisone. Had a dexascan in October and discovered I have sever osteoporosis. Was told to try to taper off the prednisone more quickly and began taking the Evenity shot once a month. I took them for a year and my Dr told me my last scan showed some improvement. I also take calcium and Vit D. I am now taking the Prolia shot twice a year with no side effects. Currently down to 2 1/2 mg prednisone. I am having a hard time at this level but am gutting it out to try to get off of prednisone all together . I am taking Methotrexate but I don’t feel like it has helped me at all. I do yoga 3 times a week and I work 3 days a week. Try to keep as active as I can. I was desperate last week and tried the cold plunge but did not get any relief from it.

I had my first Dexa scan 8mths after starting on 15mg prednisolone in May 2023. The fastest rate of bone loss on prednisolone is in the first 6mths, so I waited till after that. It showed low level osteopenia in the lower lumbar but hips were good. I may have had slight osteopenia before PMR, no idea. I'd also lost over 4 stone in the year before the dexa, and recent big weight loss can make dexa results appear worse than they are.

Since starting on pred, I've eaten more than the recommended daily calcium intake (1300mg), along with two 1000mg vitamin D a day to improve calcium uptake. I avoid calcium supplements which can cause kidney problems, and avoid high oxalate foods like beets, beet greens, almonds etc, which can combine with calcium to form calcium oxalate crystals, bad for kidneys and joints. I take vitamin K2/D3 which directs calcium to bones and out of arteries. I used to do heel drops each day and stand on one leg at a time for a full minute which is proven helpful for stimulating bone growth, but had to stop that last year after developing painful Morton's Neuroma in my feet.

My doctor suggested another dexa scan a year after the first but I couldn't see the point. I'm already doing what I can to help bones and I'm not prepared to take bisphosphonates or similar because of side effects. Currently reducing to 3.5mg pred.

X-Rays have shown I have cppd arthropathy in my hands and knee. Calcium pyrophosphate crystals. Another reason for me to avoid calcium supplements. It confuses the issue of whether it's the pmr or cppd if I appear to he having a flare. Methotrexate was suggested and I debated really hard about taking it but ultimately said no thanks.
The Reclast was completely covered by my insurance I guess because it was administered at an infusion center in a hospital.
Anytime I have tried to 'weather' through a flare when tapering I eventually gave up and went back to the last effective dose and tried a slower taper. That's where I am at now.
I also have some osteoarthritis. Pmr, cppd, OA, they are all painful conditions.
Healthy diet, reasonable exercise, good night's rest and lowest dose of prednisone for now. Still hoping to get to get to 0 prednisone.

Another thing that would help bones is HRT, but you need to be pre-menopausal or within 10 years post. You will definitely want to discuss with your doctor as there are pros and cons. If I were younger I'd be doing it.

I can only comment on my experience when I was taking prednisone for my PMR. The dose that I was taking at the highest was 10 mg. I was very surprised when I went to visit my endocrinologist who I visit every year and I’m on Fosamax for many many years which was helping me pretty well wasn’t perfect I never had great bones but it wasn’t great! After being on prednisone I was very shocked because my next DEXA test showed quite a bit of deterioration in my bones even though I was taking Fosamax and never had this many problems before. The bottom line is each person reacts differently to every medication including prednisone. For me I don’t know if it’s because I am a very small person but it not only affected my bones but it also affected my glucose number while eating the same exact foods I ate before. So really it depends on each individual person how the prednisone reacts with them some people could take super high doses and have no side effects so really it’s kind of like an individual thing and if you have any questions talk to your rheumatologist and any doctor that you feel could be helpful to you. Wishing you the very very best going forward!

I am 72 and was first diagnosed with full-blown osteoporosis at 58. After three years on fosamax it improved to osteopenia, where it has remained despite a month on 30 mg of prednisone. I had a scan eight months after PMR diagnosis, and still in osteopenia range. I fall several times a year with only one broken bone, my wrist two years ago, but started back on fosamax which I tolerate well. My doctor wants me to get most of my calcium from food, as the supplements can cause plaque buildup in the arteries. I also take 1800 mg vitamin D daily. So, I believe you can have limited improvement in bone density and stay stable even on prednisone.

I WAS taking HRT post menopausal and I was feeling great. A gynecologist convinced me the benefits outweighed my risks. I got to an age, can't remember how old I was, when I thought I was too old to be taking it. So I quit taking it. If I could go back, knowing what I know now, I would have kept taking it.